While MPN are considered rare or “orphan” diseases, they afflict people all around the world. Here are foundations and patient resources beyond the United States.
ON-LINE PATIENT-TO-PATIENT COMMUNITIES
Thanks to technology, MPN patients and care givers can connect with others around the world. These resources have participants from most every continent.
MPN-NET: http://listserv.acor.org subscribe (it’s free!) with email to email@example.com
Discussions include patient experiences, psychosocial issues, new research, clinical trials, and discussions of current treatment practices and alternatives. The principal focus is expected to be information and reassurance for patients and loved ones.
Facebook MPN Groups & Pages
There are numerous groups on Facebook. Some are “open” and others are “closed” (you request access and be approved by an administrator).
Each group has its own culture and groundrules. They are administered by patients or care givers of MPN patients. They tend to have a certain topical focus, and many of us participate in several groups.
Most groups are “closed” to protect the discussions from showing up on newsfeeds, getting personal information shared with marketers, etc.
A Friendly Note about Facebook and Social Media:
Some people have created a Facebook account with a pseudonym for the purpose of maintaining some privacy. Some people have done so for more nefarious purposes (collecting patient data without consent, selling, spam). So if you do so and request to join a group, consider informing the administrator so they will favorably consider your request.
ORGANIZATIONS OUTSIDE THE UNITED STATES
MPD-OZ http://mpd-oz.org email: firstname.lastname@example.org (Ken Young)
Leukemia Foundation http://www.leukaemia.org.au/blood-cancers/blood-cancer-support-and-advice
Funds research and provides free services and support to people with Leukaemia, Lymphoma, Myeloma, MPN, MDS, and related blood disorders.
MPN Alliance Australia Contact: Jolanda Visser email@example.com
Fighting Leukemia Public Union Contact: Baghirova Mehriban: firstname.lastname@example.org
Canadian MPN Network http://www.canadianmpnnetwork.ca email: email@example.com Toll Free : 844-644-6766
British Columbia: Vancouver Contact: Mark Williams firstname.lastname@example.org
Alberta: Edmonton Contact: Cheryl and Eugene Petruk email@example.com
Saskatchewan No current group established Contact Alberta group
Manitoba No current group established Contact Alberta or Ontario group
Ontario: Hamilton Contact: John Clark firstname.lastname@example.org
Toronto Contact: Kevin Brown email@example.com
Kitchener/Waterloo Contact: Joanne McKinney JMcki99425@aol.com
Windsor Contact: Jane Fleming Janefleming62@gmail.com
Ottawa Contact: Phil Arner firstname.lastname@example.org
Quebec Contact: Cheryl Petruk email@example.com
Newfoundland and Atlantic Provinces Contact: Simon Lono firstname.lastname@example.org
The Max Foundation www.themaxfoundation.org
MPN Support Program: Day by Day Contact: Lyat Granati Espinosa Lyat.email@example.com
Danish MPN Patient Organization Contact: John Jensen: firstname.lastname@example.org
MPN Voice www.mpdvoice.org.uk/ MPN Voice is a UK based web site and team that provides information and support to those diagnosed with a myeloproliferative neoplasm (MPN). MPN Voice has members across the UK and worldwide. It organises regional patient forums in the UK and co-ordinates a Peer Support programme to allow people with MPNs to contact other more experienced patients.
Association ALTE-SMP http://alte-smp.org
MPN-Netzwerk, eV www.mpn-netzwerk.de
Contact: Rainer Kuhlmann email@example.com
Contact: Werner Zinkand firstname.lastname@example.org
National Cancer Registry Ireland http://www.ncri.ie/
The Flute of Light Contact: Erez Rasilevski Erez.email@example.com
MPN Advocates Network Contact: Robert Zelig firstname.lastname@example.org
Gruppo AIL Pazienti MMP Ph- (AIL MPN Patient Group) Contact: Massimiliano Donato email@example.com
Contact: Kaori Taki firstname.lastname@example.org
REPUBLIC OF KOREA
Korea Blood Cancer Association Contact: 김민정 Min Jeong Kim email@example.com
MPN Stichting http://www.mpn-stichting.nl
Landsverk Norwegian Blood Cancer Contact: Inger Margrethe Inger.Landsverk@mimer.no
APCL Associação Portuguesa Contra a Leucemia www.apcl.pt
Contact: Lara Cunha firstname.lastname@example.org
UMF Association Association for help to patients with Myelofibrosis
Contacts: Sanja Kotur and Jelena Lamovec email@example.com
Association of Patients with Haematological Malignancies http://www.hematologickypacient.sk
This is a citizen’s association to actively represent and promote interests of patients with haematological cancer-related diseases in exercising their right to health care leading to the prolongation of life and improvement of its quality. Provides free legal advice, patient education and support.
Contact: Katarína Fedorová Katarina1.firstname.lastname@example.org
Contact: Kristina Modic Modic.email@example.com
AEAL – Association for Lymphoma, Myeloma, and Leukemia patients. www.aeal.sp
Contact: Paloma Hernández firstname.lastname@example.org
MPN Patient Support Association Switzerland Contact: Peter Löffelhardt email@example.com
If you know of other great patient resources, pass them along to us at firstname.lastname@example.org